Ok, I can't think about this anymore, so need your help..

I had valve and catheter replaced in 2012. It was adjustable, so that was a plus. Unfortunately, I'm at the top pressure and still having daily symptoms. I saw a headache specialist and my surgeon on Monday. The surgeon thinks I'm still over draining a little and need to replace valve with system that can increase my pressure a little further. The headache specialist suggested a 3 week intensive pain management program that has a multidisciplinary approach. I'm trying to make a decision, but don't like either option..lol.

I think my main concern with the program is trying and not making any progress because it's subtle low pressure stuff. Insurance will pay for some of it, but I'll be responsible for any copay, hotel, food, etc in addition to losing income for that time. I'll also be going through it all alone because it's 2-3 hours away from my closest supports.

On the other hand, I can't imagine having another surgery. I feel like I'm just getting back to normal from the last one. I feel better for sure, but still have daily pain and symptoms. I don't know why anyone would choose to be cut open when there may be a less invasive option, but, if it is the shunt, the program probably won't help.

You see my dilemma..any suggestions? Has anyone had experience with one of these treatment programs or insight into the programmable valves??

my goodness you do have a lot to think about, which choice gives you the best chance of feeling better I think there is a good argument for both sorry I am not much help when you always give such great advice.

what is the pain management program? if the problem is that you are over draining, how is anything other than fixing the underlying problem supposed to help? are they going to teach you to meditate or are they going to hypnotize you to pretend you're not in pain?

I have always been a fan of fixing the underlying problem. no matter how awful it might be. I had my face cut in half because I saw no other option. it was a purely logical decision, because it was a lot to go through and cost a boatload. but the jaw surgery put me into remission, it was absolutely the right decision. I just wish he could have moved my maxilla forwards more than he did.

so my vote would be to fix the shunt.(or remove it and have jaw surgery, lol)

Yeah, I cancelled the assessment for the program. I couldn't understand how going through the program would help if it is a drainage issue, but I guess they're looking more at improving quality of life. Of course they do med infusion, physical therapy, activity tolerance, mh therapy, homeopathic remedies, etc..so yes, basically numbing or programming you into forgetting..lol.

Now, I have to go back to the hospital for another appointment with the surgeon because I agreed to have the surgery. The surgeon said I just needed to call if I was interested, but gatekeeper is making me go into the office again..ugh, I hate this crap!

I guess my symptoms aren't as bad as they once were, so I feel a little ridiculous having surgery. I mentioned that maybe it's not that bad, but the people around me disagree. My symptoms do get worse when it rains, if I am active, or try to leave Columbus. But, my vision hasn't been affected and I'm not in agony. There's always this little part of me that thinks there may not be anything wrong with me..like all the voices from doctor visits past are coming back to haunt me..lol. I'm having a lot of random issues right now (having cyst removed next week, increased thyroid meds to deal with some symptoms which brought on gout and other symptoms, ect), so really just hit a wall..again. I'd just like to leave my body for a few days and get a little peace, ya know?!

well it could always be worse, but I'm sure it could be a lot better. I wasn't in agony, and I never had vision problems, but I was in pure misery. I guess you have to decide, but only you know what is really going on and how much you can tolerate. don't let a bunch of people/doctors who don't reside inside your skull tell you whether your symptoms are significant or not.

So sorry to hear you are still dealing with these issues, Julie. Just wish they wbould do a little research first.. Have they checked to see if you have a CSF leak? Have they done a myelogram to make sure the valve is working correctly? What are they planning on doing during surgery, replace the valve and tubing again? I do hope they are able to get to the bottom of this.

Deb, misery probably is the best description..just uncomfortable all the time..some times better, some times worse. We'll see what new insight the surgeon has next week ; )

Thanks Linda! No, no CFS leaks. They haven't checked shunt. Because it's improved, he's thinking it just needs tweaked up a little more. Unfortunately I'm at the highest setting, so that means surgery. They'll just replace the valve, unless they find something else.

I am so sorry that you are going through this and that I've only just picked up your post . If they know that the shunt is over draining could that be because you've lost weight and the pressure it is set to isn't compatible with the weight loss? Just a thought, as I have read of people with shunts who have lost weight and then had a problem with the shunt setting. I know programmable valves can be a plus, but there does seem to be a lot of down sides to them. I am assuming they have ruled out all the things that can affect your setting.

Fingers crossed that this is resolved for you soon, and that there is a successful outcome. Is it worth contacting the IHRF for some input?

Update: I saw the surgeon yesterday and apparently I'm a mess. I'm having symptoms of both high and low pressure, as well as another random headache type. As a result, they're scheduling me for ICP monitoring. I know many of you have had this done, but it's new and unnerving to me. I have been lucky and have had my lumbar shunt since 2002. As many of you know I've had several revisions, but overall it's been good. I mention this because I've never had them mess with my skull and it freaks me out! I'd like to hear from some of you that have had good experiences with this test..what's it like, what's the recovery, how accurate were the results, etc.

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Subject: Re: Ok, I can't think about this anymore, so need your help..

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